Work: a post-stroke balancing act

Hi there,

Sorry, I know it’s been a while and I didn’t mean to neglect you for quite so long.  I’ve been a little busy with the new job.

As you know, I started a new job with a rather well known firm in January.  I want to talk about it a bit, but I’m going to ask you to forgive me first for not being very specific on some of the details.  There is a good reason…

Those of you that know me personally know that, despite this blog, I’m relatively private about things that matter.  For that reason my name is never posted and my friends know not to name me; my workplace has never been named and those who love me will protect my anonymity that way.  But also there are real dilemmas — or maybe they are just in my head  — around an employer (or future employer) knowing too much about what really goes on.

By that I mean that it’s one thing for your boss to be aware that you’re balancing issues to get through things, but you get to choose who else does or doesn’t know on a need or want basis.  And also I wouldn’t want the hand that feeds me to feel exposed by anything that my own experience might reflect on them, inadvertently or otherwise.

Which is all my long-winded way of saying that if you’re going to comment on this one, please please don’t include my name or my workplace!!!  THANKS!

So…

I started in January.  My days went like this:

07:10, alarm goes off.  08:10, leave the house. 08:30 start work.  12:30 (ish), 30 minutes to get a sandwich.  17:30 leave office.  18:00 Get home.  18:10, eat toast.  18:30, go to bed.  Repeat five times.  Stay in bed or on sofa as much as possible at the weekend.  Repeat continuously.

Yes, really.

It’s a well known fact that many stroke survivors, even ones like me lucky enough to really get more-or-less properly well, often suffer with severe tiredness.  It certainly gets better (as those who will remember when I couldn’t stay awake more than a few hours will attest) but this new routine felt taking a million steps back.  I had no life.  I couldn’t make new friends in my new city.  I had to give up netball as I just couldn’t do it.  Toast was about all I could be bothered to ‘cook’.

The impact of tiredness goes further than having to sleep, of course.  The problem is that by day 4 or so, one gets a bit fractious in one’s head and has to treat every day like it’s PMS day… for those of you fortunate enough not to have to deal with that one, for some of us there is one day every so often where nothing is ok.  For me, on those days, which are increased in numbers per month somewhat, I have to constantly remind myself that the source of the problem is X and not what is apparently irritating me to get through it, which is knackering in itself.  Then I start reverting to losing words so I can’t say exactly what I want to say. Then I lose sentences and it all goes a bit downhill.

The good news? We fixed the worst of it pretty easily, over the course of a couple of months!  Yes, thank God!  My doctor did blood tests and it turned out the combined forces of blood thinning and being a particular brand of female meant that instead of being occasionally and mildly anaemic, I was so anaemic they telephoned me during an evening while I was at an ex-colleague’s leaving drinks in another city to ask me to go in straight away for an blood transfusion.   The actual fix for that bit?  A permanent supply of iron tablets.  How easy was that?

What’s more I’d come of the Q10 supplements that had helped so much with energy because they made me, basically, want to jump off a bridge at certain points in time.  (And yes, it took a while to isolate them as the factor).  But one of the Stroke Forums started talking about Krill Oil and it turns out that the Krill Oil gets rid of the negatives that the Q10 seemed to cause for me.  It’s £40 a month all in on top of the other stuff, but it’s so seriously worth it!

So between iron and Q10 and Krill, I got my evenings and weekends back. Sort of.

It’s so exponentially better than the first couple of months – it’s been nearly four now – that I don’t see it as that much of a hardship (His mysterious ways??!) but I still go to bed about 21:00 on weekdays and sleep by 22:00 ish.  Though I’ve also reverted to that post-stroke annoyance of then being awake for an hour or two around 03:30 which doesn’t help.  But that means I get my weekend days to do what I like.  Evenings, it seems, just remain a bit of a challenge.  Sometimes when I am in my old city for work during the day – which happens often – I see a friend in the evening because I am there and I can.  But it always bites me on the bottom the next day and I’m learning I can’t do it unless I think I have an exceptionally light day following.

I don’t think that is going to change.  The key issue is really not my outside-work-time at the moment, since I’ve just chosen not to worry about that until I’ve properly settled into the job.  But it does mean I have to work quite hard at managing timelines and other people’s expectations around me working outside sensible hours just because they do (or are late delivering something).  That might sound ok to you but, like I said, it’s not who I feel I am and  not the person I want to be at work.  It’s just the way it has to be for the time being, in this job anyway.

I have no choice but to work.  But I do have choices about how I work and the life I choose to pursue.  I chose a serious company that brings the potential for serious hours and stress, but I get to choose how I work within that company and the boundaries I set.

That sounds reasonable but bold, right?  It doesn’t feel like that.  You see it’s not the person I’ve always been and it’s not the person I am yet comfortable being. I once had an employee who went home on the dot of 17:30 every day, only delivered what was expected and would never put themselves out for anything.   It drove me up the wall, even though he technically did nothing wrong.  I guess it may have been more the attitude that came with it.  I don’t think I’m quite like that.  I do put in extra time but it has to be on my terms for me to be able to get up and in the next day.

Luckily I have two extra-ordinarily understanding line managers and a couple of other equally understanding managers to work with. I also have some really amazing colleagues who are delightfully supportive (and that’s not dependent on any brain-bashed issues!).  I don’t think they really always get it – in fact often they don’t even know about it – but those that do (and particularly the bosses) always do their best to let me set my own boundaries, which I rather appreciate.  Sometimes I see they don’t realise something and I choose not to enlighten them as often as I choose to.  We’ve also established that where possible I work from home – a big fat armchair – on Wednesdays to break up the week.  With the advent of Skype, conference calling,  screen-sharing and, by virtue of the fact that I do many things outside the regional  team remotely anyway, I can do almost anything from home and often people don’t even know that’s where I am.

Basically, it’s a balancing act.

Post-stroke my life is a balancing act.  Literally and figuratively.  In order not to literally fall over I balance my world the best I can.  Some weeks I do well, others I have my best friend reminding me no job is worth everything, especially one where no one ever dies as a result!

And, do you know what?  I have a friend two friends at work whom we shall call Em and Lo.  Em and Lo are both new mums.  They are both juggling the need to work full time and be the mums that they want to be at home.  They have to manage their before work routine to a tee.  They have to leave exactly when they say they need to leave else their babies are in trouble.  They do often pick things up after their babies go to bed but, do you know what, they really shouldn’t have to.

What I’m really saying is, it’s not just me – or us – who have a hard time making things work.  It’s not just having had a stroke that causes these kinds of issues.

Everyone has their stuff.  I was just fortunate enough not to have much before, so maybe it’s just my turn.

Anyway, bed time.

Nite nite. xx

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5 comments on “Work: a post-stroke balancing act

  1. Cheryl on said:

    I am so glad you have a manager that understands. I have a manager who is much younger than me and just does not understand, I sometimes cry for no reason at all & mood swings are another thing. I tire easily. I just don’t know how to handle it any more. I can not afford to give up my job. I just wish so would read up about people who have had strokes.

    • I need to be careful what I say here, but my current organisation has a significant area that doesn’t understand it has an obligation to assist. It penalises me for some issues on a permanently arranged basis, but then doesn’t assist with the issues it’s penalising me for. I do get it. x

    • And I do too – the crying when I’m tired and so on. I get it. I promise. I’m working hard to try to sort out the issues but often I want to give up too.

  2. Hi -

    I am in a pre-return to work and post stroke phase. My head is very messed up, but people tell me I look ‘normal’ from the outside. I need to give some serious thought into a return to work plan. Did you return to the same profession / job / career or did you need to switch?

    If you don’t have time or energy to respond I do understand.

    • Um, I don’t want to discourage you but I switched. BUT I was on 24-hour call so the hours were really unpredictable and could run for 36 hours straight which obviously I couldn’t do any more. So now I consult in the same area. It’s not what I used to do which was my dream job, but I’m not dead so… Sorry if that’s disheartening – if I didn’t have the on-call issue it would have been ok.

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